In 2001, Toni Bernhard was struck down by a mysterious virus during a trip to Paris. She never recovered. She now suffers from what she herself describes in her book as “the symptoms accompanying a severe flu, including the dazed sick feeling and low-grade headache, but without the fever, the sore throat and the cough. To imagine it, multiply the extreme fatigue of a flu by an order of magnitude. Add in a heart pounding with the kind of wired, oppressive fatigue that healthy people associate with severe jet lag, making it hard to concentrate or even watch TV – let alone to nap or even sleep at night.” Despite this, she manages to inspire people by imparting her wise advice on how to deal with illness, which is mainly based on tenets of the Buddhist faith. Toni has been a practicing Buddhist since 1992. In this article, Toni has kindly agreed to let me interview her.
Sarah: Buddhist teaching refers to a lot of different stages. Can you please tell the readers about the stages you went through when you first fell ill and how you managed to take control of how you feel and react to being chronically ill?
Toni: When people get chronically ill, they usually go through the four stages of grieving that apply when we’ve lost a loved-one: denial, anger, depression or sadness, and acceptance. I was stuck in stages 1-3 for many years. I think the grounding that I had in Buddhism before I got sick helped me to finally reach acceptance. That was the point at which I began to think about writing How to Be Sick.
Sarah: On the topic of reactions, how do you deal with the ignorant (and sometimes hurtful) comments and attitudes of people who do not understand your illness?
Toni: I used to be stung to the core when people didn’t understand. But I slowly realized that this reaction only increased my suffering. So now I try to see those comments as reflecting their ignorance and I don’t take them personally. People are rarely being intentionally mean, even when their comments are hurtful. They just don’t understand the difficulties of chronic illness. After doing a radio interview about my illness, I did encounter someone who was being intentionally mean. He went to my website and got my email address and sent me a nasty note calling me an “a motivational slacker” (whatever that is!). Even though I’d come a long way in not taking ignorant remarks personally, I felt terrible and hurt. But I had my own book to turn to for help! I realized that this was said out of ignorance, that he must have been suffering greatly to want to be mean to me like this, and that it only increased my suffering to internalize it. So, instead, I sent compassion to him over his suffering. I tell this story, partly to let readers know that I still have difficulties and have to remind myself of the practices in the book that could be helpful at the moment! Yes, I wrote the book, but I’m still a work in progress.
Sarah: On the topic of loneliness (or solitude, “the positive loneliness”), how do you deal with this without falling into the depths of depression? I believe this is something with which so many of us chronically ill people can identify, as we have all lost friends or had to deal with people’s hurtful reactions to our suffering. In addition, many of us have had to forego attending social events because we just don’t feel well enough.
Toni: A big portion of the book is devoted to just this subject. I talk about it in several chapters because it was my biggest challenge — learning to spend so much time by myself. But I’ve come to love the solitude. As with everything else, it starts with accepting your life as it is — not fighting against what you can’t change. That opens the door just a little to seeing what you might find in this new life. I wrote about solitude in a recent blog post at Psychology Today. I’ll include the link in case people would like to see it: http://www.psychologytoday.com/blog/turning-straw-gold/201105/how-turn-loneliness-sweet-solitude
As for friends whom I lost, when I learned to forgive them, I experienced such a tremendous relief. I didn’t realize how much mental suffering was being caused by my resentment and anger toward them when, in reality, they wished me the best even if they didn’t hang around. Some people are just uncomfortable around illness. Others may develop problems in their own lives and not have the time to come and visit. I just let all of that bitterness go. It was so freeing.
Sarah: You mention your beautiful hound dog Rusty in your book. A lot of chronically ill people feel that their pets have really helped them to get through tough times. Would you agree?
Toni: Yes, I agree. He accepts me as I am. He doesn’t even think of me as sick! I’m whole to him and that makes me feel whole.
Sarah: I like that you mentioned dealing with insurance companies in your book. My insurance company have mostly been particularly nasty and heartless whenever I call them up, which either ends with me putting down the receiver and bursting into tears or having a fit of rage (albeit not to the insurance company themselves). What was the most frustrating situation you had to deal with with your insurance company and how did you manage to keep calm and not lose your cool?
Toni: The most frustrating encounter I had with my insurance company was trying to get approval for an off-label use of an anti-viral. Let me share my strategy in dealing with any bureaucracy. I’m always calm and nice to people on the phone. Otherwise, they get defensive and it becomes hard to communicate. They just get out the “rules” sheet and stick by it. But if I remain polite and, in effect, “put myself at their mercy,” more often than not, they try to find a way to help. Many of the people we get on the phone when we first call have very little power to bend the rules. Getting angry at them is like hitting our heads against the wall. But I’ve found that if I’m polite and calm, they’ll find a way to help, or, if they can’t, have me talk to their supervisor. [Sarah: I couldn’t agree more here, although despite being polite and calm with authorities (and insurance companies) here in Germany, I’m afraid I can’t always report the same success, so I guess it also depends on the individual you are dealing with. Some people are unpleasant through and through even when you are nice to them. I have been patronized, had to endure racist comments and been accused of lying by my insurance company.]
Sarah: What inspired you to write your book in the first place? How did you motivate yourself to keep going despite your acute and persistent exhaustion?
Toni: I had a longstanding Buddhist practice before I got sick. Buddhism is a very practical path. Like many others, I don’t consider it to be a religion. It’s a path of learning to cultivate kindness and compassion and contentment toward ourselves as well as others (and in this way has the same values as all spiritual and religious traditions). Buddhist practices helped me move to that last stage in the grieving process — to acceptance — and, when that happened, I wanted to help others. That’s why I wrote the book. As I talk about in the book, it wasn’t easy. There were times I felt too sick to finish it. But I wrote when I could and, from the bed, completed it. Then to my utter shock and delight, a publisher took it on!
Sarah: In your book, you describe your husband Tony as an excellent caregiver. We often tend to focus on the burden of the sick whilst forgetting the burden of the caregiver. What are the problems that caregivers tend to encounter and what advice would you give to a caregiver who is feeling overwhelmed?
Toni: Caregivers are unsung heroes in my opinion. There are many online sites that caregivers can turn to for support. On my website for the book, under the link “Chronic Illness: Helpful Links”, I’ve included links to several of them. Caregiver burnout is a major problem. Caregivers need to learn to ask for help. Most people want to help; they just need to be asked. There’s a whole section at the end of the book on caregiver burnout and the many practices that can help with it. I can’t list them all here, but I’m so glad you raise that as an issue.
Sarah: How do you deal with disappointment – disappointment that a new doctor turned out to be uncaring, rude or even unhelpful; disappointment that a “promising” new treatment didn’t work after all?
Toni: It’s still a challenge to deal with disappointment. But I’ve learned that the most important thing is to take care of my mental wellbeing and so I deal with disappointment by talking kindly to myself. It’s the opposite of negative self-talk or that inner critic that we all know so well. It felt awkward to do at first, but now it’s very natural and is so soothing. I might say, “It’s so hard to be disappointed by yet another doctor” and I might pet my arm with the hand of the other arm as I do this. We can’t be too nice and kind to ourselves! It’s the least we can do to help support our poor sick bodies.
Sarah: Looking to the future, do you believe your condition will ever change? Do you plan to bring out another book?
Toni: I always hold out hope that a new treatment will help or that I’ll just spontaneously recover my health! As for the future, right now I’m concentrating on writing some short pieces for Psychology Today. Maybe one day I’ll have enough good ones that I can gather them into a new book!
Sarah: Last but not least, you talk a lot about how fulfilling online friendships have been for you? For those readers who would like to get to know you and your work better, how can they find you?
Sarah: Thank you so much, Toni, for so kindly and generously donating of your time to help others! I wish you and your family the very best for the future!